Sir Isaac Newton, take note, my Dystonia has served as a vivid example of your 3rd Law of Motion gone haywire: For every [voluntary] action there’s an equal and opposite [involuntary] reaction.
Now that the involuntary kinetic forces generated by my voluntary movements have begun to magically disappear, walking is no longer a contact sport. I feel as if I’ve fallen down a wormhole and emerged into a parallel universe where Newtonian mechanics have drastically simplified. My alternate reality gives me pause as I adjust to my newfound freedom. Who knew walking is as easy as putting one foot in front of the other and telling your legs where to go? Destinations that formerly loomed as remote don’t seem quite so far away.
When I trudged around the city with my walker, I measured distance by the corresponding depletion in my energy and operated on a permanent power outage. Every ounce of my being directed an overwhelmingly focus to the technical details of getting from Point A to Point B…with little thought for my destination – and scant attention to the scenery along the way. Post DBS, my energy quotas have completely transformed. I make my way around my neighborhood with power to spare enjoying the local landscape. Think of me as a bee buzzing along on full throttle as I relish the “conserved” energy I previously expended on the mechanics of walking.
I’m not the only one benefitting from my newfound energy. My puppy is thrilled to have a new training partner. Now she’ll have to learn to keep up with me (lol)!
Posted in Life
Tagged Activa neurostimulator, DBS, DBS therapy, Deep brain stimulation, Dystonia, Gait, Hope, Independently mobile, Involuntary movement, Medtronic DBS Therapy, Mobility, Mount Sinai Beth Israel, Mount Sinai Hospital, Movement disorder, Neurological disorder, Neurosurgery, Optimism, Programming, Walking
Having been a “solo act” for a little over a week, I’m ready to – knock on wood – announce my new status! The occasion of our break-up was simple: in a miraculous burst of post-DBS reality, I came to the realization that my shiny blue walker had outlived his usefulness. At its genesis, our relationship stood a marriage of convenience. My inner stubborn mule protested his attentions – until it became abundantly clear my new friend offered benefits! The rock by my side, he protected me from a precarious loss of balance, carried my packages…and my puppy, and offered a spare seat on a desolate stretch of street.
Now that I’ve left my walker by the wayside, I find myself in a strange new reality. At times, I reach for him as I leave my apartment. After all, over the course of 2+ years, his constant companionship became a force of habit and, I’ll admit, a bit of a safety blanket. Life without him may be strange but it’s neither cold nor empty. Not quite used to navigating the local terrain without my hot wheels, I instinctively head towards ramped walkways when stairs have pleasantly become an option. Mind you, my gait still has its quirks and I entertain an unfounded concern that the full force of my involuntary movements will return.
Now that I’ve gone solo, there’s no turning back. Indeed, in a bizarre psychological conspiracy perpetuated by my feet, my brain and my “ex,” a dalliance with my walker actually makes my Dystonia worse!
Posted in Life
Tagged Activa neurostimulator, DBS, DBS therapy, Dystonia, Independently mobile, Involuntary movement, Medtronic DBS Therapy, Mobility, Movement disorder, Neurological disorder, Stairs, Walker, Walking aid
Within my neighborhood, I rule the sidewalks in the company of my slick, 4-wheeled sidekick. Venturing onto public transportation pitches me into the world of “handicap accessible.” To my utter dismay, the 86th Street subway, a hub of activity and my home base, fails to accommodate. The “convenience” of the express train perpetually looms a foreboding 3 flights of stairs away.
So what’s the problem? Isn’t this where the dashing knight in shining armor comes galloping onto the scene to rescue the damsel in distress struggling with a precarious descent while juggling 5+ pounds of folded metal? Plenty of burly armed men bustle past me…not to mention a choice selection of NYC yuppies. Adamant about requesting assistance, I’ll patiently await my gallant to little avail. Seems this dystonia damsel requires a megaphone to motivate an endless supply of walking testosterone pursuing their destinations with single-minded focus.
Life is a trade-off and my solo adventures arrive bundled with a steep price. I find myself recalibrating my notion of “independently mobile” to accommodate the human and technological assistance I’m helpless to escape.
In 2013, I took a summer “vacation” from Dystonia! This year, I packed my Dystonia – along with my cane and walker – to head to destinations north of the U.S. border. In case you’re wondering, I left my ego and my pride safely tucked away in my apartment. This was my first travel adventure with walker in tow and I was determined to serve patriotically as the penultimate trooper. Certainly, I’d no intention of defining this sojourn by my special needs.
The advance forecast was smooth sailing, my only trepidation the scents that threatened to assail me. Little did I expect a daily roller coaster ride rife with spine-tingling bumps and spur-of-the-moment curves.
Old Montreal offered a charming tangle of narrow cobblestone streets and squares lined with bistros and shops inhabiting the shadows of a modern city. Calling the terrain challenging is an understatement when my walker bounced over every square inch of cobbled friction. Swallowing my fatigue, I plodded along at my own measured pace, feeling a bit like Moses parting a sea of pedestrian traffic.
Unbeknownst to me, Montreal was merely my “practice run.” Our next destination, Old Quebec City, presented a veritable bobsled track snaking along the bank of the St. Lawrence. I found myself chasing my walker down descending routes, then huffing and puffing the upswings. Rain showers forced me to navigate single-handedly, a swift kick to my stability. I wasn’t the only one aching: my poor walker survived worse for the wear, even requiring an impromptu French Canadian repair!
A series of small victories over an endless obstacle course taught me an important lesson about weathering life’s bumps and bruises. While my sojourn was physically daunting, I brokered a treaty with my limitations and adjusted my future travel expectations.
Posted in Life
Tagged Balance, Conditions and Diseases, Disability, Dystonia, Health, Independently mobile, Mobility, Montreal, Movement disorder, Neurological disorder, Old Montreal, Old Quebec City, Quebec City, Walker, Walking aid
The latest experimentation with my meds sent my walking into a funk, leading me to a newfound appreciation of why I tolerate their medical mischief. It also rendered me significantly less independently mobile – in need of what I shall call a “new friend” – landing me smack in the middle of a vigorous debate between my good sense and inner stubborn mule. Seems my resistance to special assistance is alive and kicking. Notwithstanding 40+ years living with Dystonia, I cling to a foolish insistence I’m no different from everyone else.
As a cantankerous attitude sought to assert itself, complications immediately ensued when I discovered the surprising rewards of life with a walker. Let’s start with my ability to perch comfortably at random street corners – not a bench in sight – for a much-welcomed respite. It dawned on me, not only needn’t I fear wiping out from an unruly twist of foot…or exhaustion…but I now enjoy a custom seat at any outdoor venue. Further, thanks to my visible aid, New Yorkers have become more generous with their assistance.
Where I expected shock from friends, I encountered awe over the creature comforts at my fingertips. Indeed, they quickly jumped on the bandwagon, appropriating space for handbags and parcels – triggering an onslaught of speculation about the moneymaking potential of my new adventure. Inject a flash of ingenuity and my walker may very well present a portable gold mine.
As for me, I often mistake myself for a mother out for a spin with stroller in tow…only this femme is walking herself!